Unwitting Victims or Informed Medical Consumers? How are Dialysis Patients Viewed by Their Nurses and Staff?

On May 31, 2016 Nephrology News & Issues, a highly respected trade
publication that reports on developments in nephrology and dialysis
treatment, carried an interview with Francyne N. Rosenstock, Vice
President of Business Development and Marketing for Renal Reserve
entitled Reducing Dialysis Nurse Burnout. 1 Renal Reserve is a
medical staffing agency specializing in supplying dialysis centers with
long-term (13-week) traveling nurses and permanent RNs, licensed
practical/vocational nurses, patient care technicians, registered
dietitians, and social workers. They understand and deal with the causes
of staff turnover at U.S. dialysis centers.

When asked if burnout is more common among dialysis nurses, compared to
other specialties, Ms. Rosenstock said, "This is not a simple yes or no
answer. I think nursing, in general, has a higher burnout rate than
other disciplines in health care because nurses are on the front lines
of patient care. They have a connection to their patients, especially
patients who they are involved with over a long period of time.
Outcomes, good or bad, affect them."

She went on to say, "Dialysis nurses know that when it comes to
dialysis, death is always lurking. So the question is ‘when’ not ‘if,’
because dialysis is about delaying death, not curing the disease.
In other disciplines, nurses have hope for reversing a disease,
unlike dialysis nurses who know they will lose their patients
eventually. This has to affect a nurse. Dialysis nurses are a special
breed, compassionate and dedicated to their patients, but eventually,
the gloom does contribute to burning out."

Asked if fewer nurses are choosing to go into dialysis, she said,"Yes.
It is not as 'glamorous' a career as other disciplines such as ER, labor
and delivery or ICU. It does not pay as well as other disciplines even
though dialysis nurses are highly skilled.It’s not a 'happy'
discipline because dialysis nurses are providing palliative care, not
aiding in curing a patient.

So, is that the way to view dialysis: as palliative,
end-of-life-treatment? If this is true—and I doubt all dialysis nurses
feel this way—then we patients are all lost; victimized again, not as
people who happen to have kidney failure, but as time-dated specimens
with limited shelf life, like stray dogs and cats in the local animal
pound. This view is intolerable and unconscionable! And it totally
ignores viable treatment options like home dialysis and kidney
transplantation.

Unfortunately Ms. Rosenstock's attitude toward dialysis is not an
isolated example, but is found too often among many medical
professionals who work for for-profit, in-center dialysis providers. A
handful of these companies dominate dialysis treatment in the U.S.
There, profit takes precedence over patient care, in spite of the
generally benevolent publicity these companies normally disseminate. I
can't point to any formal studies or surveys indicating this attitude.
(Bad news from such patient surveys would attract unwanted attention.)
But continuing anecdotal evidence between patients, of whom I am one,
corroborate my point. This attitude permeates an industry that for too
long has treated people with kidney failure as unwitting victims, not
educable consumers seeking the best treatment. And it's an attitude that
encourages passivity and depression among the majority of its
patients.2

There is little argument that most dialysis nurses, and for that matter
dialysis social workers, are dedicated individuals who are overworked,
mired in non-nursing paper work, much of it required by insurance and
government entities. Patient care suffers as a result. And patient
education on effective, safer, and less-costly home dialysis is often
ignored or overlooked, resulting in fewer than 11% of the 500,000+
people on dialysis in the U.S. doing home dialysis.3 This in spite of
the fact that more than 90% of nephrologists, when asked, would choose
home dialysis if their own kidneys failed.4

Much of it I blame on the profit motive—the biggest barrier to any
significant change in the way we provide dialysis in the U.S. Ongoing
consolidation among the few, large dialysis providers is not helping
bring change. They are for-profit corporations built on the business
model of providing a standardized treatment: one-size-fits-all. They
make money by filling more chairs in their dialysis centers with more
people over a limited time each day. And even with this model, their
profits are being squeezed by Medicare's bundled reimbursement plan.5
Add to this Congress's reluctance to allocate adequate funds for home
modality training, and change is very unlikely.6

I believe that technological advancement in the form of implantable or
wearable artificial kidneys, like those being developed at the
University of California at San Francisco, Vanderbilt University7 and
the University of Washington8 - will finally offer kidney patients a
viable alternative to the outmoded standard of 3-day-per-week, in-center
dialysis, which according to Ms. Rosenstock, is like waiting for
death.

Nephrology in the U.S. is particularly backward. It has been unable for
decades to significantly reduce the mortality rate among new dialysis
patients, which at the current of 17%, is more than double that of other
advanced nations in Europe and Japan.9 Clinical trials in nephrology
have for too long been overly concerned with medical process and not
consumer-desired results. Those results must include core
quality-of-life issues if patient health is to markedly improve.10

Research is academically driven and too often concerned with only
quantifiable medical data. Narrative data—the lifeblood of American
consumer business—is largely ignored. Consumers are given choices, while
dialysis patients are assumed to be helpless, depressed, and
uneducable.

My experience as a highly informed and involved patient includes
in-center, home hemodialysis and transplantation, as well as
participating on hospital quality committees, regional dialysis
oversight organizations, and mentoring other patients on their treatment
options. It has made me aware of the insular nature of medical practice
in the United States. By that, I mean the inability and often conscious
disregard to learn from other fields, like consumer marketing, on how to
understand and reach patients to achieve better health outcomes at less
pain and cost. Motivation is the key to changing attitudes. But you
cannot motivate if you are unwilling to listen or assume you know best
what patients desire most.

A positive case in point is related by Dr. Jose Morfin, nephrologist at
the University of California at Davis. His early intervention staff
interviews new patients in the hospital at Davis, patients who are going
on dialysis for the first time. They are asked what they need most to
continue to live active, useful lives. Many of his patients are laborers
with large families. Most say, "I need to get back to work to support
my family." They are then offered home dialysis options, which 18%
freely choose and are motivated to do.11

I can cite numerous of examples of people on dialysis, many of them
patient advocates like myself, who work fulltime, participate in sports
and other physical activities, travel widely, raise families and enjoy
life fully while accommodating their need for kidney replacement
therapy. It's not rocket science; it is all about patient education and
personal desire.

It's not my intention to make Ms. Rosenstock, or for that matter any
other dialysis professional, the object of derision, but rather to wake
them up to the reality of the new patient-centered marketplace. Change
is inevitable, and the old dialysis standards will be replaced by newer
technology that better serves the patient's need to live a full, active
life, no matter how long that may be. Dialysis technology and therapy
should accommodate the patient's lifestyle, not the other way around.
Waiting for death is never a solution.

Comments

Gale Schulke

Jul 12, 4:30 PM

I decided that I wanted to see if any of my nurses or the other dialysis nurses I come in contact with believed this. The answer was an unequivocal NO! Every single nurse I talked to did not look at their patients as a time stamped entity, death waiting to happen. They viewed their patients as people who had been dealt a difficult diagnosis, but needed help and guidance to wade through the waters of dialysis. Some even told me that if they viewed their patients as being hopeless, they would not be in the field.
I believe, as do most of the nurses I talked to, that we are doing what we do because we are trying, with every fiber of our being, to prolong lives. To allow them to live a normal life on dialysis. I have, honestly, never viewed my patients as having a limited time on this earth.

John Agar

Jun 21, 4:23 PM

It seems almost a classic Catch 22. Maybe our path here is smoother, straighter, less mired by lobbyists and inertias ... Thankfully, I think it is. Your description of the communication ineptitudes of US physicians does surprise me though ... and takes bit of the wind from under my wings ... for, knowing Michael well as I do, I had thought there have been might more Kraus-clones out there than there really are. Uncommonly, I find myself at a loss ...

Vanessa

Jun 17, 8:42 PM

This piece is very well written and all too true. I agree that times are changing (all be it slowly) .. It's so important for dialysis patients to be educated, know their choices and be heard.
Thank you David!

Mel Hodge

Jun 16, 6:51 PM

In my view, the fundamental source of failure of the dialysis industry to meet the real needs of dialysis patients that David so aptly describes is not that they are for-profit firms. All of us repeatedly buy products and services from for-profit firms with which we are entirely satisfied. And if we are not, they become history, as far as we are concerned.

"Motivation is the key to changing attitudes. But you cannot motivate if you are unwilling to listen or assume you know best what patients desire most." The problem in dialysis is that patients are not the customer --they are a component of the product. By putting a patient on and then off a dialysis machine, the provider collects $249. The dominant customer to whom the provider must listen is Medicare, not the patient, if he expects to continue to collect his $249.

Any solution, then, requires Medicare to redefine the product it is buying in a way that motivates the provider to align his services with "what patients desire most." I have argued that the single, most actionable step to create that motivation would be for Medicare to replace payment per treatment with payment per treatment-hour. Time is the single most important dimension of effective treatment, as John Agar has often pointed out. If so, pay the providers for time, not merely for 'on and off.' This would also motivate the providers to emphasize home dialysis because every additional hour at home would earn them an additional unit of payment at low cost and hence high profit.

This simple, yet beneficial change in Medicare's product definition is not the only change where better alignment of
Medicare's purchasing and patients' interests is badly needed. Consider Medicare's 30 month "Coordination of Benefits" period, the period before Medicare becomes the primary payer, replacing the far more profitable private insurers in that capacity. Perhaps it is just a coincidence that half of the dialysis patients die in less than 48 months, but certainly Medicare's purchasing terms and marginal payment leave little financial incentive for providers to strive to extend this dismal mortality outlook. One solution might be to replace the Coordination of Benefits " period with a continuing cost sharing with private insurers -- replace the 30 month bonanza with an indefinite period of adequate profitability.

We can't replace Medicare as the payer (and hence customer) of the dialysis industry, but we can encourage Medicare to define what it is buying to be as close as possible to what patients would define if they actually were the customers. It's time for dialysis patients to make their voices heard.

John Agar

Jun 18, 11:33 PM

As ever, Mel, you have not only eloquently identified the problem, but far more importantly, have guided thought to the solution ... and a very sensible solution too.

My question! What do US dialysis doctors think? Sometimes, I feel very lonely in this space as, although Dori assures me that lots of dialysis physicians are lurkers and read these blogs, then, if they do, not one of them ever voices an opinion - positive or negative, for or against - anything that the vanishly few of us who do comment here might say.

Surely they are the ones to carry this argument to the door of Medicare.

David Rosenbloom

Jun 19, 1:35 PM

John, your plea for an intelligent dialog between dialysis doctors on this or any other advocacy website is laudable and understandable. But it is also very unlikely.

Most physicians in the U.S. are poor communicators. They lack the skills or courage to advocate publicly. Yet many will privately acknowledge that the current system is untenable, that losing 17% of one's patients annually is not only disgraceful, but unconscionable.

Many, I believe, complain or suffer in silence, because to voice their opinions publicly goes against the time honored code of not criticizing one's peers. Many, I suppose, do not feel it is their role to buck the government (Medicare) or the LDOs, who after all for good or ill, are their financial lifeline. Added to this, medical schools by and large do not train doctors to be social critics and reformers. They train them to be medical sleuths, working alone, collecting laboratory data, and often ignoring vital anecdotal evidence patients provide them.

There are a few great doctors, yourself included, who have the courage of their convictions. They lead not necessarily by being online public advocates, but in the manner they educate and treat their patients. Michael Kraus of the University of Indiana is such a physician. Annually, he provides a forum to advocate strongly for home dialysis - a forum where patient advocates like myself are provided equal standing with physicians as presenters and educators. I could name others who are steadfastly carrying the fight to improve dialysis in the U.S. As a patient at a large, leading Southern California medical center, I know several younger, highly dedicated doctors, mostly foreign born, who communicate with patients as equals, seeking their counsel and partnership toward improving health outcomes.

Unlike you, I do not look to physicians "to carry this argument to the door of Medicare." Most as I point out, are ill equipped or not motivated to do so. It is really up to the patients and patients advocates, like MEI, to do the heavy work. Patient-centered medicine is making major inroads into medical practice, aided in it own well-meaning but clumsy fashion by Medicare.

Last December, I was invited with sixteen other kidney patients advocates from around the U.S. to attend the annual Medicare meeting in Baltimore. This was only the second time patients were invited to this annual conclave of over 1,300 CMS officials and CMS contractors. We were not a quiet, subservient group, and made our voices heard. And what we heard back from Medicare, was that they open to pushback, especially from patients. They want to see improvement and cost containment, but in most cases do not know how to go about it. It's up to us, the patient advocates, with help from enlightened physicians like yourself, to move the goal closer to the day when dialysis treatment is all about maintaining quality of life and not just staying alive.